Sunday, September 25, 2011

Two nights ago the kids were so wound up. Almost as if they knew this was a night for celebrating. They didn’t even go to bed until midnight. They were chasing one another on the couch, down the hall, wrestling on the floor and giggling like two normal, adorable little kids. What a difference a year made for our family. And then again, in some ways, not one thing has changed. In some aspects, we are right back where we started. September was by far the biggest yo-yo month of 2010 and it continues to be our ‘interesting’ month this year as well.

This morning Wrenn was crying at 5:25am. I got her from her crib and took her to the rocking chair and we cuddled for a few minutes. I looked up at the clock on the wall and couldn’t believe what I saw. At 5:30am a year ago, on September 22nd, we watched the helicopter at Children’s land on the building; Wrenn’s new lungs had arrived. She was in the OR ready for her rebirth. It feels like yesterday and I’m sure you would all agree time has flown. Oddly enough, Wrenn usually sleeps through the night and so to wake up at that very moment took my breath away. It was God’s way of saying, remember and now appreciate; and so I did. I said a tearful thank you and remembered every second of last September's events. And I asked that these perfect lungs be with her for decades to come. 80% of infants make it past the first year after transplant. One hurdle—GO WRENN!

I called my mom this afternoon. She said she’ll never forget my phone call to her and reminded me what I said to her in tears that special day: “They’re here.” It was probably all I could get out at the moment and I’m pretty sure there was dead silence after that. I think it was the first time in many months I had actually inhaled a real deep breath. One thing I knew—we couldn’t go forward without new lungs.

Needless to say I didn’t sleep very well last night. So many emotions funneling through my mind. So much to be thankful for and so much to appreciate. I remembered saying last year after her transplant that on the one year anniversary I’d write the donor family. I didn’t think the day would come so fast. I didn’t know what to expect at all during this first year. Level two rejection? NO. Seven broncs? NO. Three additional months in the CICU and 7 West? NO. My daughter eating and walking and giggling? NO. My kids running around and chasing one another as if I had dreamt the entire last year? NO. With so many unknowns, how could I possibly tell myself I’d be ready to write such an unbelievably hard letter in just 12 months time? I figured back then I’d have the words but I still don’t know what to say or how to even begin. In a way I’d be opening Pandora’s Box. I don’t know the other family’s situation. Was this an abuse case or a horrible accident? Are they ready to hear from me? How are they remembering September 21st? I was told by my transplant family that some donors become VERY involved in the family’s lives and feel a real connection. In a way I’m scared about what I might find out. I guess when the time is right, if it’s ever right, I will know and will draft that difficult letter. Needless to say, I pray for them often.

Getting to know Wrenn... One year post-transplant she is doing AWESOME! J She’s eating food, sucking a bottle, walking, talking, singing, dancing, jumping on the bed, wrestling with Tanner and growing like a weed. She’s 8 kilos and 28.5 inches long. Her favorite food in the entire world is Tortolini. Her least favorite food is green beans. She loves wearing dresses, taps her head for a bow and is the happiest little kid when she awakes in the morning. Her favorite TV show is the Wiggles and don’t disturb her while she watching or she’ll growl in protest. She plays peek-a-boo and uses her cuteness for attention. She climbs the couch and follows Tanner around like a puppy. They are best friends and watching their relationship grow makes me both happy and sad. When I wrote my last blog I explained that sometimes tears follow laughs and that’s why. When we first chose transplant I worried so much about Tanner’s reaction to her diagnosis one day. I worry how that will change him as a person and know he will be in great pain like all of us. We pray every day that Wrenn goes the distance and we see her old and gray one day. The way it’s supposed to be.

A few months ago I was approached by one of the genetic scientists at Children’s. He said they think they figured out how to grow stem cells from skin cells and that they wanted to use Wrenn’s skin cell samples in their experiments. They are very interested in her genetic make-up and feel she could be a key in finding a cure for ABCA3. I signed a release form back in May and felt that would be a hell of a legacy for such a special little person to fulfill. I have heard from some amazingly smart doctors that stem cell research is going to do fantastic things for medicine. To be surrounded by such brilliant people excites me and I hope that Wrenn benefits from what is discovered in the coming years.

Last year, the night of Wrenn’s transplant, we went with our friend Billy to an Italian Restaurant called Zia’s. We knew it was going to be a long night and were told to prepare for the fast part of the ride. This week our good friend, Joe is visiting from Orlando. He joined us for dinner at Wrenn’s rebirth celebration, which of course took place at Zia’s. It was a wonderful night having us all together. Wrenn had picked out her own dress (white dresses seem to be her favorite) and had fun high-fiving us at the table and showing off her sweet smile.

The biggest news I have to share is that we are leaving St. Louis. In mid-November we’re heading back to our home state of Virginia. We always knew we were in St. Louis temporarily and I guess with our lease being up this past July, everything finally fell into place. We will be heading into the unknown as we work out certain details but overall, we are looking forward to having our first date since Wrenn was born. Babysitters are hard to find when you live in the city where you know nobody. Especially when you have a child like Wrenn, who requires tube feedings and is immune suppressed. Long road trips are very hard and flying commercial exposes Wrenn and our family to too many viruses. Wrenn’s next bronc is scheduled for October 10th. If all goes well we won’t have another one for six months. Mostly, we are excited to leave our two-bedroom apartment. It was a great temporary fix for making trips back and forth to the hospital but we’re ready to be together in a house again, with a yard, some much needed space, and a neighborhood for Tanner to play with the same friends each day. I don’t feel the need to have all the answers but it sure helps to be on familiar territory while trying to figure it all out.

2
comments:

Anonymous
said...

Nicole & Jason - Can't wait for you guys to get back to VA and start your family life again. Your stories are so heartfelt and they always bring tears of joy to my eyes. I look forward to seeing you two again and meeting Wrenn. She is a miracle baby, and I so believe in miracles! Hope all goes well on the 10th and I look forward to hearing that you are back home in Virginia. Your friend always, Wanda

Nicole & Jason:As I sat and read your most recent post, I'm shedding tears - again. Ours was a chance meeting through Kirsten, but I also feel it was fate. There has not been one day since she introduced us that I haven't prayed for Wrenn and I will continue to do so. On October 10th, not only will I be praying, but so will the congregation at LaVale Baptist Church. It has been nothing but joy for me to watch Wrenn thrive and grow over the past year. My prayer for her now is simply "Go forth and do great things" ~ God has given you the second chance you needed. He will lead you the rest of the way.I have a cousin that lives in Richmond that has two chldren, so let me know if you want her contact information regarding babysitters. Also, Kirsten still has several college classmates living in the Richmond area. I feel sure she can "hook you up" too.I do hope once you are home you will continue with this blog so I can watch the growth and love of the Parris family.In Christian Love,Susan

Wrenn's Baby Breath Fund

Click here to DONATE through the National Transplant Assistance Fund. Any help you can give will go directly towards Wrenn's medical expenses. Thank you!

Wrenn's Story

Wrenn was born on April 14, 2010. She was a little early, but not alarmingly so, and at 18 inches long and just under six pounds she was pink and pudgy and looked to be the picture of newborn health.

Unfortunately, Wrenn quickly developed breathing difficulties and needed full-time oxygen or her little lungs would collapse. Doctors suspected that Wrenn might have a rare genetic disorder called Surfactant Protein Deficiency.

Shortly after her birth a series of tests were run, and on her one month birthday her parents found out that Wrenn does, indeed, have the incredibly rare genetic disorder known as ABCA-3 Surfactant Protein Deficiency.

Wrenn needed new lungs and in September 2010, two months after her family relocated to St. Louis, she received a double lung transplant.

This site has been created as a space for Wrenn's family to keep friends and family updated on Wrenn's progress. She's a fighter, so we expect lots of updates!

Wrenn's parents have good health insurance, but they're still going to have huge medical bills to deal with, so we hope that anyone who can will donate to Wrenn's Baby Breath Fund using the NTAF link above.